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Hi all,

I've been trying to absorb all I'm reading and it's all starting to go in one ear and out the other.

My 8 yo son's tic has been progressively worsening for the better part of a year. His tic manifests itself mostly as a series of coughs/throat clears so naturally we initially thought it was something medical. We tried so many things (adenoid removal, reflux, etc) until we decided to see a pedi neurologist about 6 weeks ago. Well, she immediately diagnosed it as a chronic tic and put him on clonidine. We weren't happy about it but she instilled a lot of confidence in us that it would work.

 

Well, after a few weeks we met with her again and decided to switch to the patch. Within one day he had a pretty bad reaction to the patch and ended up in Childrens Hospital - Boston for 2 days. It was horrifying. Because of this we ended up switching neurologists to the Dr's at Childrens. They switched him to Tenex and within a couple days I started reading up on alternatives which led me here.

 

Now, when he started the Clonidine he wasn't THAT bad but progressively got worse and then better but never gone. Then when he came off the clonidine, the tic came back with a vengeance. It was almost debilitating.

 

After switching to Tenex, he is no longer the zombie he was when on clonidine. He's also taking it at night instead of in the morning.

 

What we're noticing now that we're trying to find the triggers is that his tic's are much worse during moments (however brief) of downtime. If his mind is taken up doing something that he gets immersed in like games or playing then his tic almost disappears completely.

Naturally this means that bedtime is a major challenge. He lays in bed and coughs sometimes for a couple hours or more. It's rough.

 

We give him the Tenex within an hour of going to bed but it doesn't seem to have the sleepy affect that clonidine does (which we're happy about).

 

Getting him to sleep at night is about as big a deal to us as trying to keep him from becoming a disturbance at school. We plan on starting dietary changes this week. I'm about half-way through Sheila Rogers book and will start as soon as I get to the section about how to.

 

Does anybody have any initial thoughts on how to counter the tics that seem to be happening when he's idle?

 

I don't even know if I'm asking the right questions. This is all so overwhelming. I'm sorry if I'm not making sense. My head is overloaded. I need someplace to start.

 

Thank you,

-Kevin

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Hello Kevin,

I think the first thing I would try being that the vocal tic is a cough/throat clearing, is maybe do a dairy free diet for a couple of weeks and see if that helps. dairy produces mucous, so its possible that could be the trigger for him to want to clear the throat.

 

I'm surprised that a neuro would have prescribed meds if you say it wasn't that bad,..some would go by if it was really bothering the child, and also sometimes the tics can fluctuate. I've been close to wanting to try meds a few times, but after sticking out a bad period, I would feel like it wasn't necessary and I bought some more time.

 

You're on the right track, just keep reading, you'll find alot of things you can try to lessen the tics.

 

does your child have any other issues? how long with this tic? any motor, or is it just vocal?

 

 

thanks

Faith

Edited by faith
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Thanks or the fast reply Faith.

I'll definitely try eliminating dairy.

He does have one other thing he does that may be a tic. He scratches the base of his nose, sometimes to the point where it gets all red and starts to crack. He says it just itches.

 

Other than that, he has what a psychologist has said was a mild ADD. It hasn't yet affected his schoolwork and he's got good teachers that deal well with it. The psychologist wanted to take a wait-and-see approach.

 

Other than that, he's a great kid. He's a gymnast. Spends 13 hours a week working out so he definitely gets exercise. His downtime (which is pretty limited compared to most kids) is his to do what he wants. He doesn't get a TON of TV or video game time. Definitely less than most kids, I'd think.

 

He's pretty sensitive though. He worries about how some kids at school create a disturbance. He worries about bullies at school, even when they're not bothering him. He's got lots of friends, even through all of this, and he doesn't like it when bullies tease anybody, especially his friends.

 

Just giving a little more background. Hopefully it's useful in some way. Stress definitely causes him to tic and school can get stressful. It's also boring at times which also causes him to tic.

 

Thanks again for reading and helping.

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Hi Kevin and welcome

 

good that you are exploring natural and alternative therapies :) My own son has genetic Tourette syndrome and was initially on meds but horrid side effects so we are most thankful to have found another way to help him. My husband has TS too and clonidine was like poison to him! Made him psychotic.

 

I have a link in my signature below on what treatments my son has used over the years so wont repeat all that here. If interested just click thru

 

one thing I would highly recommend is that you begin with magnesium supplements. many parents here use the Natural Calm or Kids Calm mag powder mixes. There is research to support the theory that many people with TS tics may be magnesium deficient

 

Also, when your son is having down time, try epsom salts (magnesium sulfate) footbaths and see if that helps. 3/4 cup epsom salts in a basin or foot spa with warmest water possible and soak those feet for about 1/2 hour . We use a homedic foot spa that keeps the water warm and also has a vibration mode that massages the feet.

 

a soak in a tub of epsom salts before bed can also work wonders for my son. 2 cups epsom in a tub of warmest water and soak for 20 min

 

As Faith has mentioned, some parents have found that either dairy free and or gluten free can help some kids too

 

You will learn a lot about elimination diets from many posts here

 

and one thing we almost all seem to have noticed is that artificial food additives trigger more tics so avoiding those really can make a big difference

 

keep asking questions as there are many perspectives to all this and it can be very overwhelming....just rem,ember that it isnt a one shoe fits all as the solutions are as diverse as the many triggers and not all kids have all of those triggers, nor does everyone react the same way to the same treatment.

 

just take it slow and do one thing at a time so that you know what is helping and what is not.

 

hoping you find answers to help your son

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Thanks SO much Cheri. I was really hoping to hear from you.

Couple questions- Is the epsom bath something that gives an instant calming effect (however slight)?

I plan to pick up Natural Calm tomorrow. If I give that to him before bed do you think it will help him get to sleep? If I give it to him in the morning to calm him during the school day could it possibly cause him to doze off at school?

 

Lastly, and the thing that has been wearing on my mind a bit when I read all your stories-

How did you come up with such a complex series of supplements? You have so many things in your routine. How did you know which combination worked and which weren't?

Honestly, that part seems the most overwhelming of all.

 

 

Thanks again,

I'm really looking forward to trying out these ideas! It's given me so much hope..

 

 

Also, through all of my learnings and observations I've come to one BIG conclusion: I have the same affliction as he does.

I've had a chronic cough (not anywhere near as frequent and sometimes debilitating as his) that has tormented me for decades. I've tried everything and every doctor keeps telling me it's reflux.

The interesting thing is that I never realized that I had other associated tics until I started paying attention. A lot of them are head and neck movements that ultimatley have the same affect on me as the throat clearing. It feels so much better knowing that it's this, actually. I'm happy it's not acid reflux because it means that I don't have to treat it with horrible medications. Once we get my son on the elimination diet I'm going to do it right along with him...

 

Okay, one more question: Is there any way to TEST for a Mg deficiency?

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Hi Kevin

 

as mentioned in that thread of mine, I based the supplement plan on the research of Bonnie Grimaldi, who now has her own supplement products http://www.bonniegr.com

 

when my son started supps, Bonnie's product line had not yet come out but she did share what she had done to help her child on forums and her then simple webpage. I printed it out and took it to our Integrative doctor who did testing for us and we tweaked things to best fit my son's needs. Over the years we have added and removed things and near end of the thread you will see a current update from this year where my son, now 20yo and doing great, takes very few but very specific supps at this time

 

and yes, my son has instant relief from an epsom tub or footbath...

 

The spectracell tests can show mag levels

http://www.latitudes.org/forums/index.php?showtopic=755

 

take a look thru the rest of our useful threads sticky for other good info too

http://www.latitudes.org/forums/index.php?showtopic=2459

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Hi Kevin,

Just wanted to welcome you to the boards. I, too, have a son who tics, worries a lot, has mild ADD, and is a competitive athlete. My son tics more when he's stressed, getting sick, or when his allergies are bugging him. He's 11 and has been ticcing since he turned 9. We've never done meds and when things got bad I would tell myself that eventually it WILL end. And, it always did!

 

As for the magnesium epsom salts baths my son was not keen on sitting with his feet in a bucket and he hates taking the Natural Calm so I found some other ways to get him to comply, LOL! I give him the Floradix liquid magnesium/calcium supplement which tastes much better but costs more. And, the foot baths I sell it to him as a necessity for healthy feet for his tennis matches! He goes through shoes quite frequently b/c of his pounding on the court and he sometimes has heel pain or random foot pain and the epsom salts help with overall foot health. So, in other words, I don't tell him the baths are for the tics. I tell him they're good for muscle repair, etc. Actually, now that I'm typing this I probably should make him take a whole bath b/c he worked out yesterday with a trainer and I KNOW he'll be sore. There's only so many mountain climbers, push ups, and Russian twists an 11 year old can do!

 

I hope you keep reading these boards. There's so much information that it can be overwhelming but I know I've finally come to a place where I'm way more relaxed about the tics, and that's a good thing for our family.

 

Bonnie

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Thank you Bonnie. We started Natural Calm on Monday and he LOVES it mixed with lemonade. When I got the okay on Monday from the neuro to give it to him she also recommended melatonin 3mg at night so we do both.

For the week leading up to adding these two things in we found that it took him at least two hours to get to sleep at night. After giving it to him at night (I'm giving a little more weight to the melatonin, actually) Monday night he fell asleep in 30 minutes and last night (tuesday) he was out in 15.

 

Monday was such a good day. He barely tic'd at all (relatively). Tuesday was a little worse but they can't all be great days.

 

We met with the school administration today to see how they're going to handle it in school and part way through the principal mentioned how his (now 20-year old) daughter started developing a serious anxiety disorder at around age 9. It got to the point where it would take her 3 or 4 hours to get to sleep at night while she went through her nightly rituals more associated with OCD but her tic's were just as bad. He described one of them as a constant rubbing of the eyebrow until it was worn off.

 

He told us about a clinic run by the Boston University school of medicine that helps people manage anxiety disorders and the more we think about the cause of this the more it seems to be anxiety driven. Without the use of med's they had his daughter almost fully "cured" within 3 months.

 

I put a call in to them and I'm fairly certain the wait to get into the program is upwards of 6 months. Waiting to hear back.

 

Patiently watching for that light to show up at the end of the tunnel.

 

-Kevin

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Thank you Bonnie. We started Natural Calm on Monday and he LOVES it mixed with lemonade. When I got the okay on Monday from the neuro to give it to him she also recommended melatonin 3mg at night so we do both.

For the week leading up to adding these two things in we found that it took him at least two hours to get to sleep at night. After giving it to him at night (I'm giving a little more weight to the melatonin, actually) Monday night he fell asleep in 30 minutes and last night (tuesday) he was out in 15.

 

Monday was such a good day. He barely tic'd at all (relatively). Tuesday was a little worse but they can't all be great days.

 

We met with the school administration today to see how they're going to handle it in school and part way through the principal mentioned how his (now 20-year old) daughter started developing a serious anxiety disorder at around age 9. It got to the point where it would take her 3 or 4 hours to get to sleep at night while she went through her nightly rituals more associated with OCD but her tic's were just as bad. He described one of them as a constant rubbing of the eyebrow until it was worn off.

 

He told us about a clinic run by the Boston University school of medicine that helps people manage anxiety disorders and the more we think about the cause of this the more it seems to be anxiety driven. Without the use of med's they had his daughter almost fully "cured" within 3 months.

 

I put a call in to them and I'm fairly certain the wait to get into the program is upwards of 6 months. Waiting to hear back.

 

Patiently watching for that light to show up at the end of the tunnel.

 

-Kevin

 

I would like to hear more about the Boston thing....do they other affliates...ied Georgia

also the melatonin....does that correlate with 5htp..anyone???

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Welcome Kevin, you're part of a wonderful place with tons of info to help your son!

 

Fixit,

 

Yes....

 

excerpt

 

http://home.bluemarble.net/~heartcom/trypt...omelatonin.html

 

Tryptophan is an amino acid (L-Tryptophan), one of the building blocks of protein, but unlike some amino acids,

Tryptophan is considered essential because the body cannot manufacture its own. Tryptophan plays many roles in

animals and humans alike, but perhaps most importantly, it is an essential precursor to a number of neurotrans- mittters (Serotonin being one of the most important) in the brain. As such, Tryptophan is the only substance that can be converted into Serotonin. Since Serotonin, in turn is converted into Melatonin, which has been shown in several good studies to assist in sleep, Tryptophan clearly plays an instrumental role in balancing mood and sleep patterns. Tryptophan may also be of some benefit in the treatment of some psychiatric disorders.

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Welcome Keven,

 

I do not have much to add because everyone has done a great job. I did want to let you know my son is 16yo now and his ts was bad at onset. We had good results with natural calm and melatonin. Our first medication was the C patch too and my son looked so out of it we took him off after a month.

 

It is wonderful that your son gets so much exercise, that will naturally boost his serotonin. My son also is a huge lover of sports and a great athlete. It has been his saving grace in school because other kids respect him for that. My son has always been a happy kid and not to bothered with the tics, I give that credit to the exercise. He is training to be fire fighter and is a volunteer now. He cannot go into a burning building yet. I have been amazed at how many young men have been sent to the hospital during this training, and my son is hanging in there. I feel TS comes with some sort of anxiety and for him this training is doing wonders for his self esteem.

 

Good luck

CP

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Thanks Kim

So harnessed with this information how does one know what step is needed to introduce....

he does have a hard time falling asleep

and now that we have gone through this last process.....it seems to me like some of my ds' things might be ocd or anxiety...certain times,places, locatons....and about a week before we started abx ....he was walking infront of me and i overheard him say....i like to touch things....

and he does touch the walls and such....

who would know about htis ...a naturopath????

would he need trypohan...or malanin or seretoin...or all.....

 

 

 

Welcome Kevin, you're part of a wonderful place with tons of info to help your son!

 

Fixit,

 

Yes....

 

excerpt

 

http://home.bluemarble.net/~heartcom/trypt...omelatonin.html

 

Tryptophan is an amino acid (L-Tryptophan), one of the building blocks of protein, but unlike some amino acids,

Tryptophan is considered essential because the body cannot manufacture its own. Tryptophan plays many roles in

animals and humans alike, but perhaps most importantly, it is an essential precursor to a number of neurotrans- mittters (Serotonin being one of the most important) in the brain. As such, Tryptophan is the only substance that can be converted into Serotonin. Since Serotonin, in turn is converted into Melatonin, which has been shown in several good studies to assist in sleep, Tryptophan clearly plays an instrumental role in balancing mood and sleep patterns. Tryptophan may also be of some benefit in the treatment of some psychiatric disorders.

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would he need trypohan...or malanin or seretoin...or all.....

 

no! dont give all! that could be dangerous and lead to serotonin spiking!!

 

one cannot give serotonin in that form ...it isnt available that way (at least not that I am aware of)

 

it depends what you are trying to achieve as to which one to give.

 

tryptophan is converted into 5HTP which then becomes serotonin. Serotonin in turn converts to melatonin

 

serotonin is best for OCD, depression etc, so taking 5HTP OR (NOT and) tryptophan can be helpful to boost serotonin

 

melatonin promotes peaceful sleep

 

 

these should all be okd first by a doctor tho, especially if the child is already taking any medications!!

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would he need trypohan...or malanin or seretoin...or all.....

 

no! dont give all! that could be dangerous and lead to serotonin spiking!!

 

one cannot give serotonin in that form ...it isnt available that way (at least not that I am aware of)

 

it depends what you are trying to achieve as to which one to give.

 

tryptophan is converted into 5HTP which then becomes serotonin. Serotonin in turn converts to melatonin

 

serotonin is best for OCD, depression etc, so taking 5HTP OR (NOT and) tryptophan can be helpful to boost serotonin

 

melatonin promotes peaceful sleep

 

 

these should all be okd first by a doctor tho, especially if the child is already taking any medications!!

 

 

i wasn't thinking of all of them.....i was asking how do you decide if you need to low on the ladder....melatonin....or higher 5htp...if you only have sleep issuse use melatnoin.???

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